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Saturday, 22 December 2018

OVER TO YOU BY FIONA CUMMINGS


What a mixture this blog is, so are you sitting comfortably? Well, lets chat, think and answer.

 

Firstly, a light subject but one that moves us to tears or makes us laugh with happy funny memories. Something that effects everyone all the world over and yet it can be so very different. It’s something which we are, or can be, really passionate about. We can make love to, marry   in its presence, think of our children and remember our school days. Something that takes part in most funerals and we can feel anger happiness and desire for. Though this thing, has the same name, it can be so very different, depending on the persons taste. It can be angry, happy, beautiful, depressing, mournful, futuristic, ancient, modern or old fashioned and we all experience this at school, even participate in some way.

 

 What is it?

 Music! How does music make us feel the way it does? May be when we are older, we hear a song that was our Mums favourite song and we feel sad missing our Mum more as we focus more on her when this song is heard? A school dance, prom, or just that end of year disco as it was in my days… We remember the crazy clothes we wore back then we cringe smile laugh allowed even.

 

What is it about humans where we like to drive our cars and perhaps put some music on? Even when we have a baby, we find a musical box to help with sending them to sleep, or we sing them a lullaby. What else can make humans react in such a way?

 

The earliest forms of music were probably drum based percussion instruments using sticks and rocks. In about 4000 BC the Egyptians had created harps and flutes, and by 3500, BC lyres reeded clarinets had been invented.

   

Denmark invented the trumpet. The Hittites invented the guitar. Classical music is said to be rooted in Grecian innovations. Famed mathematician Pythagoras dissected music as a science and invented the keystone of modern music what we know of as the scale. But what made those people do this? Is there something in our makeup that makes us need to have music? For me personally, I listen to music every single day/night. Sadly, I don’t play as much as I would like to and my Husband doesn’t play his piano much either though he did today and it was lovely to hear. Our Son always records his Dad whenever he plays. BW is so proud of Hub and rightly so. I remember when my Husband was a very young boy about eight, being able to play the piano so very well at school. I was so in love with him in a very innocent way. We were both in the school quire too and whenever he sang, my heart pounded.

 

What does music do for you? Is there anyone who doesn’t enjoy music?       You may think if someone can’t hear, they may not appreciate music, an yet there are some very famous  musicians who are deaf.

 

And next subject.  now, you are facing blindness or may even be blind. Your eye condition is hereditary, so you can pass your condition/disease onto your children. Now if you are reading this with perfect vision, stay tuned, as a few of my readers were born with perfect sight too, but now are facing blindness.  If you have any kind of illness/condition/disease that can be passed on, would you have children?

 

In my case, my baby had a 50 50% in having my eye disease, if he didn’t have RP, he would be a carrier for sure. So, his children may have RP. So, because I gave birth to my baby, I could have been responsible for so many children being born either blind or at the very least partially sighted or a carrier.

 

I so needed a child. One night I was telling my friend how I had a huge desire to have a baby. I expressed how I had waited so many years in fear of getting pregnant as I could pass on my eye disease. She told me that by the time I had a baby, there would probably be treatment for my eye condition. I guessed she was right. I guessed wrongly. There is no treatment, but thank God, my baby can see, now by the time he has his children, I doubt there will be treatment out there, but by the time they are teens, I guess there will be something. I pray there will, be.

 

But if my child had been born with poor vision, how would I have felt now? how would I feel when he was struggling through school? In the playground, sports? Even in classroom. And then when thinking about what exams to take to lead to a job, what kind of job that will be suitable for someone with poor sight. Then learning to drive? Well it wouldn’t be happening, when their friends go out for a night, how would my Son have been able to do that? Most of his pals went night clubbing, no way you can do that with a guide dog. Personally, I would have felt so much guilt because what would stop him from saying to me. It’s my fault for giving him this disease. And when my Grandchildren are born, I will have the same worries again. Praying the baby will be born with good eyesight.

 

Now if my Son had RP, I of course would still worship him. And Hub and I would be able to give him a much better start than he or I had in life, as we will with our Grandchildren. We will be able to teach our Grand children everything we know to make their lives easier, but still they will have the effects of their eye condition to cope with. Thankfully Shamrock BW’s girlfriend, is fine about risking having a child she says she doesn’t mind if their baby will have RP. She may not, her child might, but not to have a child because of what we pass on, is such a sad situation, I mean, we pass on genes all the time that may be considered most unpleasant. Genes that may not be thought of as a disability, but effect so many people and families in other ways.     

 

But what if you have a child who has your gene that is so called faulty in my case my first would be partially sighted with the threat, they will one day be blind. And then do you think about having a second child? Taking that risk again? To some, it’s not even a risk. To some it’s like having a child with red hair rather than blonde or black hair rather than brown. Blue eyes rather than brown and so on. Your second child is fine, and then you have a third? Someone I was talking to the other day had a number of children. But they were very worried they would pass their gene onto another baby, I did wonder why would they have more than two children if two kids were fine? Isn’t that like playing Russian Roulette? And if you have three babies who have poor sight, you have a forth, how is that forth child going to feel throughout life? guilty themselves? Responsible to watch out for their siblings in the play ground for example? How are the children going to feel about their brother or sister who can see if they can’t?

 

Third and final subject. You have good sight but have been diagnosed with for example Retinitis Pigmentosa, but again, it could be any kind of gene in your body that makes your life needing a change. In a very reparable hospital in for example England, you are invited to take part in a trial, that they hope will save you from going blind at the very least. Who knows, your sight may be saved forever, may improve even. But there is a risk that you could lose all of your vision if the trial goes wrong. You have signed all the paperwork to make it so you can’t sue your administrators.

A, would you still go for the trial if you were told there was a risk?

B, how would you feel afterwards if you ended up blind? After all, it is a trial…

C, if the trial went wrong, how would you feel? Would you have regrets?

Well someone I was talking to on line last week is about to do a trial and he has very good sight right now, but this new treatment may stop him from going blind one day. He’s young still to. So, if you were him, you can see enough to read, write, walk free without a guide dog or white cane and you have a good job you enjoy but a job which requires great vision, you have a very young family, your spouse stays at home with the young babies whilst you earn for the family. Do you go for this trial? He is and he put it in such a lovely way, saying by going for this trial, he may make what is inevitable come faster/earlier than it should but he also could be saved ten twenty years of worry about going blind. By doing the trial, he is helping others trying to see if its going to be safe for future treatment. He personally wouldn’t have any regrets as taking the risk would be worth it if his life would be filled with forever sight. And if it goes wrong, then the scientists or researchers can scrap that and move on, making the way better clearer for other trials that may be more successful. This person James is selfless brave and to me a hero.

 

I know of people who have gone for trials for other ailments as well as to save their sight, and it has gone very wrong. So, what would you do? Over to you.

 

 

All yesterday I spent time writing a paper for someone. It was mentally stimulating to say the least. I did enjoy doing it though as doing such work wakens a part of my brain that finds itself in permanent slumber most of the time. I saved it to edit the next day. Unlike my blogs when anything goes. Haha. Mind you of late I have been having to fix my blogs as my software is messing things up and removing paragraphs for example. Anyway, as I finished this paper off late last night, I just had to copy and send it off by email to the Professor who was equally awaiting the work to arrive in his mailbox.

 

Stupid me thought I had sent it last night. So, I deleted the file. Oops…. Em, no, I hadn’t sent it. Panic mode struck in, as I had started to write something else in the same word file. Hub to the rescue as he heard the shrieks from the office. He said press control z. I thought that only saved it if you hadn’t saved the new copy but no, if you press control z a few times eventually you will get your work back. This only works I think if you use the software called Jaws, this is what I use to make it so my lap top talks to me…  

 

Thank goodness my work recovered came back to me and I sent it fast…

 

So, something to think about, I shall be back tomorrow with love.

 

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